“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Monday, January 24, 2011

Does disability = suffering?

When a child is born to you, you have many expectations of what they will do of who they will be. Things you always wished you could do. Things that you never had the opportunity or aptitude to do. But children may "disappoint" because they were not the person you expected them to be. Perhaps you are a musician and your child gravitates towards athletics. Perhaps you are athletic and your child gravitates toward art. You are a person who enjoys being outdoors and your child likes nothing more than to sit and read. Some expectations die because they are exceeded in different ways. Some expectations die because they are unfilfilled, perhaps because the child hasn't the requisite abilities. The disconnect between expectations and reality causes a kind of "suffering" for those with the expectations although the child may be oblivious to the disconnect and "suffering" because unless it is communicated to them that they are not meeting our expectations, they grow, happy with their lives, their interests, etc. Now to want an athlete and have an artist may bum you out a bit, but to desire a typical child and have a child with Down syndrome, for example, has thrown people's lives into total disarray.

Parents may feel great fear when a child is born with an intellectual disability. I know of mothers who have abandoned their children on this basis. I also know the abandoned individuals with disabilities as adults, many of whom may have an apartment in the community, hold a job and other than wishing they had more money (a common malaise) are quite happy with their lives. Those same mothers who could not face having a child with an intellectual disability, actually lived an identical life to the child they abandoned.

This leads us to the point of the way the child with Down syndrome, for example, is perceived. Yes they will make increased demands on their family in terms of supervision, in terms of not being able to have a decent job and so forth. However, in their own minds, they will see themselves as doing fine. With children with disabilities for a while at least, they may be oblivious to their difference because they know of nothing other than their life experience. As they grow and notice the differences in those around them, this may cause an internal dissonance or actual suffering created by the environment or how they perceive themselves in reference to the enviornment. Sure, many will desire such things as getting married, having their own home, etc. and depending upon their ability levels as well as the ability levels and creativity of those in their enviornment, this may or may not be a possiblity. The issue is the problem of equating disability with suffering particularly at points where they are not necessarily related.

Metaphorically,it reminds me of issues related to racism. For many groups of people at different times in different places, racism causes or caused them to experience discrimination and that causes suffering. It is important to state that there is not suffering in simply being a member of a racial group in and of itself (which can be a significant difference in making the comparison to disability in some of its forms). Suffering comes from being a certain ethnicity in the midst of a society that is discriminatory against that ethnicity. If I were to equate suffering with race X, you might correct me saying that that may be the experience of people of race X but it needn't be their experience. To always discuss race X under the heading of suffering would imply to the outsider that there is indeed something of a connection between race X and suffering that is unavoidable. Suffering is not the societally imposed consequence of being race X, it is simply an observed characteristic of being race X, because look at all the people in history who were race X who experienced suffering (albeit imposed by society). That does not diminish the reality of the suffering experienced by race X. It was and is real. However, if I take the next step and purposefully link race X with suffering, to some degree I may be complicit in that suffering. In the case of persons with disability, say Down syndrome again (who are arguably not physically suffering from their disability), people will then try to eliminate suffering they assume people with Down syndrome are experiencing using what they would call "humanitarian" means through such practices as abortion.

I do not want to deny that when people are suffering, they are indeed suffering. There are specific conditions that persons with disabilities might have that would cause physical suffering in a variety of different ways and I do not want to trivialize that suffering. There is also the kind of suffering that parents of children with disabilities might face which is also very real. Parenting children with autism, for example, can be incredibly difficult.

However, I do not want to project suffering onto people when they are either, 1) not suffering in their own minds, their own experience, or 2) are suffering because of something that I am doing that I can stop doing.

As stated, people may suffer when they have a disability for a variety of reasons. I may suffer due to my actual disability, perhaps it causes pain to me. I may suffer because of the disability of my child who has a disability as might my family suffer with this child. People may suffer due to the social consequences of disability to themselves or to their friends and family.

We must be careful, however, not to equate disability and suffering, particularly in situations when it is the social consequences of disabilty that lead to suffering. To equate suffering and social consequences indicates a giving over to societal effects of disability. Now I can understand that social consequences are the reality, however, at the same time if I refuse to equate suffering and disability on this level, perhaps I take the first step in changing what is considered common sensical and conventional wisdom. "Of course people with disabilities suffer from their disability" we say. But that is not necessarily true. Many people with intellectual disabilities, for example, are unaware they even have a disability let alone being distressed about it. I know of others who have physical disabilities who have come to understand themselves with their differences and are not suffering physical pain from their physical disability. They themselves have told me that they are doing fine and just wish "People would treat me like I am normal." We must be careful, therefore in equating suffering and disability and only talking about diability in the context of suffering.

Overall, I strongly agree with McNair. There is absolutely no evidence that I can think of that directly links suffering to having a disability. Sure as the entry states family members of a disabled person may suffer because they may not fit the description of a “normal” person, but the person with the disability is oblivious to their disability so why would they suffer? I don’t believe they would. However, there are those persons that are born with a physical disability. For example, I have a friend whose sister has always had a prosthetic leg. She was born with a physical disability and as far as I am concerned she lives a very normal life; by no means would I believe because of her disability she has suffered. Sure she may not have been able to be the best athlete in school growing up but is that suffering? I do not believe so. If we can make such a bold statement as disabilities equate to suffering I believe that we would notice that in all cases. McNair did an excellent job in negating that.

I love the perspective of this blog post! It is such a human condition to see something that is different and automatically assume it is painful or incurs suffering. But it is so true that in a lot of cases with people with disabilities, they are not experiencing any suffering from within, but only the suffering placed upon them. I see this with families that have really embraced their children with disabilities. They have reduced the stigma and decided to raise their child as they have their other children and not “have pity” or anything like that. And that child, in their disability has the opportunity to flourish. Our own perceptions of disabilities become the shackles, not the disability itself! I think I could loosely equate this to how the secular world views Christianity. They see us as restricted, not able to do what we want, slaves to an ancient theology. However, the things that they see as “limitations” do not cause any suffering. It is just the clash of secular culture with the laws of God that cause dissonance. How the world views our beliefs and how they differ from those of modern America is the problem. Both the bright child with Down Syndrome and the Christian can flourish amidst cultural perceptions of “limitations”.

I think that this post is very insightful and true in today’s society. Relating to my own life: it’s true that God works in mysterious ways, and in my life he works through my schooling. I am in a class focusing on students with disabilities and I just got finished with a discussion about the 18 wounds. I talked about wound 18 and it’s relation to how mothers-to-be are offered “pre-screening” to determine possibilities of birth defects. I feel like this absolutely degrades people with disabilities, labeling them “unworthy” or only “partial human”. It really hurts to think that people can treat other human beings with such disrespect. After that assignment I went onto your website and read this post. I feel that God is trying to reach me through this subject, after reading your ideas on disabilities and suffering. I think that you are right on track by saying that disabilities and suffering do not automatically come hand-in-hand, but that suffering is mostly inflicted upon disabilities by us. It is time we start acting as equals, and stop creating suffering where it doesn’t belong. We are all created in God’s imagine, so who can suffer with that?

It is unfortunate that when some parents find out their child may be born with a disability (like your example of down syndrome) then the parents decide they want to abort the child. Is the child unworthy of being born because they are at risk of being disabled? Are they inhuman because they may not be "normal"? I understand that parents have a right to their own decision and that abortion is legal, but I feel these children should have the right to live regardless. I work with children labeled with autism and I've come to know many parents. Most of the parents I know still have not come to terms with the fact their child is disabled and wont be the picture perfect kid they imagined and dreamed about. I'm not is their shoes, I don't have any children, but I can only imagine how hard it is for parents to come to terms with it. There was one parent that I did meet and had a positive attitude over her daughter's physical and mental disability. She said that God gave her the gift of her daughter and was honored that God believed that she was the best parent for that child. She considered it an honor from God. Of course it was not what she had planned for her life, but she accepted it wholeheartedly. As people in society it is important that we are understanding of others and don’t consider people less for different situations that they may be in. It is important to treat any child or adult with a disability as a person with a purpose here on Earth and treat them as any other person.

I totally agree with dr. Mcnair. I believe parents have this notion when their child is born into this world. so many parents that I peronally know have this idea about thow they want their kids to act and what type of interests they want them in. I believe that is wrong and you should let your kid do what they feel most comfortable doing. for me, I'm an athlete so I would like my kids to want to play sports. if they want to go do art that's ok to. parents with disabled kids have it most hard. i can't imagine what it is like for them. they can live a normal life if given the oppurtunity. so many parents give up on their kids it's wrong.

That was very interesting. It was well said and touched me to my very core. The thing that struck me the hardest though was the example of racism. I have never thought of disabilities in that way. I have been around them my whole life, from people with downsyndrom to a cousin who has sever CP. You can see my cousin especially struggle to make everything work sometimes but to be shun her for trying to do a better job at her everyday life just really kind of hurt her and it makes my heart sad just thinking about it. A child that grows up with a disability is learning to be who they are in the world that they are growing up in. This child does not know the difference between their world and the so called "normal" world that I live in. This also goes with deaf and blind people. They do not know the difference between my world and their world. All that person knows is that they can not see.

Nicely stated, Jeff. Is there suffering associated with disability? Absolutely! But thanks for inviting us to consider for a moment where it's coming from. The person with an intellectual disability is likely to suffer from discrimination, inadequate education, poverty, limited health care, reduced independence, social isolation, etc., etc. All those are real suffering, but they all have the same source - the barrier we place between our non-disabled selves and people with disabilities. I'd like to see those barriers destroyed. Jesus felt the same way. When Jesus healed people, he put them back together with the community. Of course, it would have been nice if all ten lepers had stopped by to say ‘thank you’, but I have a hunch that nine of them were just too anxious to get out there and start living life with their family and friends. After all, Jesus had put them back together. Praise God that He knows the difference between those things that make us unique as individuals (like this syndrome or that syndrome) and those things in the world that are truly in need of healing. Today, may God heal that which needs healing.

This was a great post to share. I was blown away by the thoughts that McNair shared. As I can recall, I cant seem to be able to find the trend between suffering and disability. Its interesting to note how we, as a society, actually put those things together- but how wrong are we for doing that? Its interesting to look into my own life and to remember some of the thoughts that I had when I saw someone with a disability. I would automatically think that they were had a bad life, and they knew it, felt it, and lived it. Its interesting to see how we as humans mark something as bad, just because its different. I appreciate the thoughts that Mr. McNair shared here. This definitely helped change some of my thinking.

I'd agree that the social suffering does not originate from the disability itself, but from the misunderstanding or ignorance of those who come into contact wit ha person with a disability.

Sadly, people just don't experience enough quality exposure to individuals with disabilities. They may see individuals with disabilities on occasion, but they don't generally engage in conversation with them or get to know them from a personal level. So naturally they just make assumptions to help fill in the blanks of their understanding of all peoples. This often perpetuates the stigmatization of such people.

I think with more effort by all people to integrate others with disabilities into more societal situations, people may have a better understanding of what it really means to have a disability. Maybe some of these misconceptions can be laid to rest and less limits be placed on these people; which may result in less exposure to these social sufferings.

What an insightful piece! This made me reflect on conversations at work with peers. Working with people with disabilities, it is interesting to observe that most expecting peers go to great lengths to have a "Normal" child. The expecting mothers that I am referring to, do everything in their power to have "Normal" children. They have all the testing possible, they are on strict diets and they believe all superstitions. After reading this piece, I asked myself, "why?" why would these women think that having a disabled child be so terrible if they themselves are exposed to people with disabilities on a regular basis? Do they not realize that disability does not equate to suffering? In the bigger scope of things, how much influence does society have on our perception with disabilities? Why is it that people feel that there is a relation between disability and suffering? How can we diminish this false presumption?

The types of suffering that people with disabilties experience are discrimination, not being accepted by society, being devalued, lack of love, and loneliness. I work with people with disabilities and their families and many families share with me and many times they even break into tears when they talk about they're kid being bullied at school for having a disability. Indeed, families also suffer from watching their loved ones experience these "social consequences" as Dr. McNair put it. As parents, we need to teach our children about diversity at a very young age so children and later on adults can be accepting of people with disabilities. I see bullying as a big contributer to the suffering of children and young adults with disabilities. Most of the people with disabilities I work with have been victims of bullying at school and they have very low self esteem and even suffer from depression because of bullying. Furthermore, they come to the realization of having a disability.

I thinnk that a disability does not equal suffering simply because the person with the disability does not know any other life than the one they were given. what is the definition of "normal" anyway? Who can we say is normalin our society, everyone has a disability of somesort in their lives, maybe it is glasses, overeating, a stutter or hearing problem. Does this mean that they are not "normal" no that just means that those who are pointing the unnormal behavior are the one's who have the disability.Jennifer B

I love what Jean Vanier says about weakness. He states, “If we deny our weakness and the reality of death, if we want to be powerful and strong always, we deny part of our being, we live an illusion. To be human is to accept who we are, this mixture of strength and weakness” (Becoming Human, p. 40). Our society puts such an emphasis on showing our strengths and hiding our weaknesses. However, as Vanier reminds us to be fully human we must embrace both our strengths and weaknesses. I think that suffering is part of the human condition. It is a very real part of our lives that we should not fear and run away from. In the book of Romans the Apostle Paul reminds us that God uses are sufferings to work in our lives:

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5:3-5 )

My heart is saddened when I hear of mothers who abort their unborn baby when they learn that the child has a disability (often Down Syndrome). Most often the reason given is because they do not want their child to suffer. I wish I could introduce these women to my friends with Down Syndrome. They are not suffering. Yes, they have had some difficult and challenging times, but we will all have difficult and challenging times in our lives. This is not a reason or excuse for aborting a child because of a prenatal diagnosis for a disability.

I think it would be a horrifying statistic to figure out how many lives were taken on the notion of suffering. Right when parents are told that they child will have disabilities, they are bombarded with ideas from other people suggesting that they child will be extremely tough to handle, they will suffer as a result from their disability, and that it is a shame they have to grow up with their disability. Immediately, parents are then forced to question their purposes in raising a child with disabilities. Should they look out for the child and the potential suffering by eliminating the possibility of suffering through abortion? Or should they raise the child in a selfish world where the child will have to fend for themselves among society? Parents should never have to make this decision in the first place. If we lived in a world where we embraced new life, no matter the circumstance. If a child was born into a loving family who cared for them and their disability, then why would they suffer? Disability should never be equated with suffering or else we will see many more abortions and many more abandoned children.

I was drawn to this article as I have two sons, and I must admit that I was anxious about the mental/physical faculties of my, at that time, unborn children. My anxiousness, however, was not rooted in some inherent fear I had over what their life experience would be, but rather my own, for as Professor McNair states, “There is also the kind of suffering that parents of children with disabilities might face which is also very real. Parenting children with autism, for example, can be incredibly difficult.” As ignorant naïve, and perhaps cruel, as this might sound, I never considered the social hardships my children would have had to endure if they in fact were born with a disability. I praise and thank God that he blessed me with two sons who do not, at this time, have any identifiable disabilities, but my estimation is that those fears which I held are common among many parents, and I fear that parents, as member the larger society, might very well focus their attention so deeply upon their own sufferings, that they unintentionally, and I would suspect, unknowingly, cause their children additional social and emotional harm. As Professor McNair states, “The disconnect between expectations and reality causes a kind of "suffering" for those with the expectations.”

As a way to illustrate this, let’s look at wound 7 and 15 as developed by Dr. Wolf Wolfensberger. First, we see that those with disabilities are prone to become scapegoats for negative events which might transpire in the home. Without meaning to, I can see how parents, who are greatly focused upon their own sufferings, might try and escape their own shortcomings, and attitudes, by asserting that “such would not be the case if it were not for my disabled child.” While the intent might not be to harm, the reality is that it does, and consequently, disabled children who might otherwise live happy lives, will become more prone to view themselves in light of their disability, and not as a unique child of God, created by God for his pleasure. Finally, according to Dr. Wolfensberger, those with disabilities’ run a greater risk of living a socially impoverished life. Again, though unintentionally, children with disabilities may not be given the opportunity to experience plays, sporting events, or amusement parks because the parent reasons that such an endeavor would simply be too difficult or unnecessary, for they might reason that such would be a “waste” of time.

This is a difficult discussion, and while the attitudes of many within a secular society is to shrug these men and women off as something “less than human”, or, “better off dead”, the response of the Christian community must be different. Jesus came to save the world of its sins; this includes those who might possess some physical/mental disability. One of the most haunting questions I have ever been asked is “do you believe that what you believe is really real,” and if Christians say that God is the creator and sustainer of all, and that Christ died for the sins of the world, then we must be very aware of how we treat those with disabilities, because if we don’t, then we cannot say with any assurance that we truly believe such to be true, for all, disabled or otherwise, are loved and created by God.

I was drawn to this article as I have two sons, and I must admit that I was anxious about the mental/physical faculties of my, at that time, unborn children. My anxiousness, however, was not rooted in some inherent fear I had over what their life experience would be, but rather my own, for as Professor McNair states, “There is also the kind of suffering that parents of children with disabilities might face which is also very real. Parenting children with autism, for example, can be incredibly difficult.” As ignorant naïve, and perhaps cruel, as this might sound, I never considered the social hardships my children would have had to endure if they in fact were born with a disability. I praise and thank God that he blessed me with two sons who do not, at this time, have any identifiable disabilities, but my estimation is that those fears which I held are common among many parents, and I fear that parents, as member the larger society, might very well focus their attention so deeply upon their own sufferings, that they unintentionally, and I would suspect, unknowingly, cause their children additional social and emotional harm. As Professor McNair states, “The disconnect between expectations and reality causes a kind of "suffering" for those with the expectations.”

As a way to illustrate this, let’s look at wound 7 and 15 as developed by Dr. Wolf Wolfensberger. First, we see that those with disabilities are prone to become scapegoats for negative events which might transpire in the home. Without meaning to, I can see how parents, who are greatly focused upon their own sufferings, might try and escape their own shortcomings, and attitudes, by asserting that “such would not be the case if it were not for my disabled child.” While the intent might not be to harm, the reality is that it does, and consequently, disabled children who might otherwise live happy lives, will become more prone to view themselves in light of their disability, and not as a unique child of God, created by God for his pleasure. Finally, according to Dr. Wolfensberger, those with disabilities’ run a greater risk of living a socially impoverished life. Again, though unintentionally, children with disabilities may not be given the opportunity to experience plays, sporting events, or amusement parks because the parent reasons that such an endeavor would simply be too difficult or unnecessary, for they might reason that such would be a “waste” of time.

This is a difficult discussion, and while the attitudes of many within a secular society is to shrug these men and women off as something “less than human”, or, “better off dead”, the response of the Christian community must be different. Jesus came to save the world of its sins; this includes those who might possess some physical/mental disability. One of the most haunting questions I have ever been asked is “do you believe that what you believe is really real,” and if Christians say that God is the creator and sustainer of all, and that Christ died for the sins of the world, then we must be very aware of how we treat those with disabilities, because if we don’t, then we cannot say with any assurance that we truly believe such to be true, for all, disabled or otherwise, are loved and created by God.

The only suffering a person with disabilities has is at the hand of society because of the blatant discrimiantion and unacceptance. However not only in society but many times and many time over in Christ Church. The hypocrisy of the church with how they treat people with disabilities is viral and God weeps for his children. I am the mother of a 26 year old son with Down Syndrome and autism and I have seen first hand of what I speak and God weeps!

Recently, my husband and I, who have no children yet, had a conversation about children with disabilities. His learning disability has been a challenge in his educational experiences and he worries about our future children because he does not want them to experience the difficulty he has had. My husband has not “suffered” so much as he has struggled, which may have felt like suffering during some crucial years of his childhood. Fortunately, my husband has never given up on learning, despite the enormous stress it has caused him.

I believe disappointment can be perceived as suffering because we create our own grand expectations for how life should be. As a child, I couldn’t wait to be an adult, only to find that I was disappointed by the responsibilities of being an adult. I looked forward to “happily ever after” when I got married, only to discover that reality is really not as fanciful as Cinderella portrays it to be. As Dr. McNair notes, “The disconnect between expectations and reality causes a kind of ‘suffering’ for those with the expectations.” My husband and I can dream that we will have perfectly healthy children or we can fear the possibility of a child with disability. Yet, to decrease the disappointment of broken expectations, we can also choose to joyfully anticipate any child, because he or she is made in the image of Christ. To specifically say that a child with disability would cause us suffering, would deny ourselves the opportunity to see a blessing.

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One of the few programs of its kind offered by a Christian university, the Master of Arts in Disability Studies at California Baptist University is a distance learning degree program designed to develop expertise in human differences. Beyond preparing professionals to lead, establish and shape disability programs, ministries and policies, CBU’s M.A. in Disability Studies prepares graduates to challenge and change the way society and organizations relate to people with disabilities. Dr. Jeff McNair is the Director of the MA program and the Disability Studies Institute at California Baptist University.